Our CF Mom meeting went GREAT! We had a lot of fun! There were 3 of us...Me, Daniel's Mom, and Catherine. It was Catherine and Daniel's Mom's first time meeting. Daniel's mom and I had lots of questions for Catherine since her CF daughter is 5 now. She was very helpful in telling us everything we wanted to know.
One thing that we all found strange, was that Catherine's CF doctor told her that the enzymes(pills that the kids take with every meal and snack to help digest the food) only work for 20 minutes. Daniel's mom and I go to the same CF clinic, and they told us that the enzymes work up to 1 hour. Now, I know all CF clinics and doctors are different, but this is kinda BIG! It's the same Creon 5,10, or 20 that all our kids are taking. Shouldn't we know if they only work for 20 minutes? Or shouldn't Catherine know if she has a much bigger time span to feed her daughter as much as she can? Something isn't right. Catherine is going to ask her doctor and I am going to ask our doctor on Wed the 4th when we go for our annual visit. Maybe somebody will give us a good reason as to why the clinics are saying different things on such a big matter.
Something good though, is that Catherine was telling us about how they are close to finding a cure for a certain gene(which none of our kids have unfortunately). But if they find a cure for one type of gene, they'll find a cure for more if not all:) I was telling them that Julie(another CF mom that I know that couldn't make it to the meeting) told me that her CF doctor said that he is really really close to the cure=) I asked her if it would just be a cure for new CF babies born today, or if it would be for all CFers. She said it would be for all CFers, which is GREAT NEWS!!! Catherine told us that her doctor(which they go to the same clinic, but have diff. doctors) said the same thing, but it would cost around $100,000 a year!! WOW!! That's A LOT of money!! So, who knows what's going to happen. I'll pay whatever I have to if it means Lil' Chris will have a longer, healthier, more normal life.
All in all, we had a blast and ended up talking until 9:15pm. I hope we get to do it again real soon. I'll let you know.
M
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5 years ago
7 comments:
I don't know what the difference is exactly between enzymes that children take and what Richard takes but he has a 3 hour window either before or after meals.Just thought I would share that with you.
Wow! 3 hours! I want those pills:)
That's great M, that you were able to get together with a few other mom's and talk! The time span for the enzymes is a big difference! I wonder what makes the difference?
Glad to hear things are going well!
Sending lots of Love to everyone, and Hugs & Kisses to Lil Chris!
Hi M,
Just wanted you to know how much I enjoyed our dinner the other night. It was so nice to meet Catherine, and hear her experiences. Next time I promise to bring pictures! I hope we can get together soon. Let me know how your clinic appointment goes. I will be interested to hear what they say about the enzymes. I hope you guys got out to enjoy the weather this weekend. The kids have been wearing themselves out playing outside. Talk to you soon. Daniel's Mom
I am so glad you had a great time meeting with the other moms. I wonder if age has anything to do with the time span for the enzymes? I'll have to ask J & G about Carly's.
Here's a thought, maybe you and the other moms could meet every other week, it doesn't have to be a dinner, maybe some snacks, but more important is the bonding, the connection and the support for each other.
I am trying to type with this stupid cat walking in front of the computer screen. Anyway,one more day...I can't wait!
lots of love, hugs & kisses
mom
Oh yeah, we are right there with you-doing whatever it takes to give our lil man a more normal life. A cure...wow...how GREAT would that be!!!!!!!!
Thank you so much for your encouraging comment on my blog. Your blog is amazing!!! I'm so excited to find it. Did you find an answer to the enzyme "time difference". Our dr says the 1 hr as well. Please let me know what you learned-that's fascinating. And Kori's comment surprised me-I've never heard of food you eat before enzymes being able to work. Interesting! How awesome that you have this great network of moms. I'm so impressed!
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